Tips people should keep to themselves

Discussion in 'Fibromyalgia Main Forum' started by kdeenak, Apr 12, 2006.

  1. kdeenak

    kdeenak New Member

    My mom doesn't know a lot about fibro to begin with. She knows I hurt, she has never really said, oh it is all in your head, or anything like that, but I think sometimes she thinks I am lazy.

    Anyway, she told me today her insurance agent came by and they were talking and she told her I had fibro. The insurance lady said she did too. The lady said, "The doctor put me on ALL this medicine and it made me worse, and I just quit taking all of it. The trick with fibro is you have to keep moving." (She told me this after asking how I was feeling today, and I told her I had to take a pain pill.)

    I am like, WHAT? First of all, this lady doesn't know me, and my personal theory about fibro is that it affects everyone differently and what works for one may not work for another. I mean that is great for her, but I don't need her telling my mom that. Now, everytime I tell her that I am hurting and can't do something she will say, oh you need to KEEP MOVING. Or, you didn't do anything today? Why not? You won't get any better until you KEEP MOVING!!!!!! Great!! If I was trying to sell insurance to someone, I think I would keep my opinion to myself, don't you?

    Exercise is fine, but I don't think that is the way my mom took it. Like I said, everyone is different.

    I didn't say anything to my mom. I just changed the subject. Am I overreacting?


  2. jake123

    jake123 New Member

    Does the insurance agent have a license to practice medicine as well as a license to sell insurance?
  3. rockgor

    rockgor Well-Known Member

    The insurance lady dropped out before she finished her "How to Sell Insurance" course.
  4. claudiaw

    claudiaw New Member

    Been there done that! Still there.:) My family and in-law's think they know everything I should be doing or doctor's I should be seeing.

    The advice goes on and on! It is very frustrating.

    Quick example: mother-in-law said she "knew" someone with FM who was cured, gave me her number.

    I called, the lady first didn't know who my mother in law was, so I had to explain how I got her number ( she thought I was nut's).

    Then I think she remembered a brief meeting, anyway her "cure" was 1 chiropractic treatment!

    I have been going to a chiropractor for 15 yrs!

    I have asked her and other's to please stop telling me what to do/try. I know they love me and want me better, but it is stressful.

    I told them I want to be better, even more than you do!:)

    I am seeing the best doc's, trying all the med's, been doing alternative therapy for yrs. And of course this website has a wealth of info.

    I am just going to have to be more firm(that is hard for me, I hate confrontation) but it is necessary for my emotional health.

    I feel for you.:) I wish I could help. There are good letter's written by people with FM/CFs for "normals" that explain it all, you could try that.

    My family just ignored those. My dad think's I have brought this on myself somehow.

    If you find something that works, let me know.

    trying to stand my ground,
  5. jole

    jole Member

    No Deena, I don't think you are overreacting. However, at the same time, I don't think there is much you can do about it either. there were times I would get very upset by people who HAVE fibromyalgia asking me why I have so much pain, and why it is so difficult for me to walk, etc. because their pain is only headaches and neck pain.

    Well, THEY HAVE fibro, and even they can't understand the kind of pain I have, or don't think it exists because it's not the same as theirs. So I've found it's best not to dwell on it because that only makes it worse.

    I feel sorry for you because that's not a fun situation to be in, especially with your mother. But remember, you don't have to prove anything to anyone, and you only have to stay honest to yourself, and if you can't do something don't do it!! We are who we are, not who we wish to be.

    Friends - Jole
  6. findmind

    findmind New Member

    Ignorance abounds...esp. about FM and CFS. There is no way to explain to others easily. I let my actions speak louder than my words.

    If I attend a family function and suddenly feel sick, I ask where is a bed I can get to.

    If people are over to my home, I excuse myself for 1 hr and go lie down.

    Over the years, everyone I know "gets it" because they realize...who the heck would want to be in bed at a party?!!!

    Don't waste your energy with the ignorant....or give them good stuff to read...the more serious, the better...its so complicated, they'll think it must be really bad. Use big words! LOL

    Take care of yourself and forget what others think.

  7. eeyoreblue02

    eeyoreblue02 Member

    you're not overracting. We're all tired of being told what to do or what we're doing wrong. My husband is convinced if I would walk when I start hurting that I would stop hurting!

    Findmind, you made me laugh when I read your post. "Who the heck would want to be in bed at a party!!??" I think it depends on how you mean "in bed at a party"!!

  8. kdeenak

    kdeenak New Member

    I agree wholeheartedly with everything you guys are saying. I have learned from this board that fibro affects no two people alike. Some days it kicks my butt! There are some days I am able to "keep moving", but if I do too much I pay for it. You have to listen to your own body and STOP moving when you need to.

    If you read my profile you will see I was really sick in 2001 with fibro, and got better in 2004. My mom was very supportive and found out a whole lot about fibro during this time. My remission only lasted 1 1/2 years and now fibro is back, and she acts like she doesn't remember anything I went through!! I just don't have the energy to remind her. I think she is in denial. She is not mean at all, though she said to me during my last horrible flare maybe you are exercising too much. I said I haven't been to the gym this week. Well, maybe you aren't exercising enough! Ahhhhhh!!!

    My meds happen to help me, and I am thankful my new doctor listened to what I told him I was on before and put me on what I told him helped me. I couldn't imagine just stopping them!!

    BTW: That question made me laugh about whether the insurance agent had a license to practice medicine, LOL!! I also agreed with the mooning sentiment ;)

    Group hug,

  9. Greenbean7

    Greenbean7 New Member

    You know what they say, advice is like a.. h...., every body has one!!

    I am trying the shake because it comes from someone who KNOWS!!! Someone who has been there and understands!

    My boss' wife is trying to cure me with magnets and nutrition. I'm willing to try anything and since she really is worried about me and my boss asked her to try and help me, I am trying what she has to offer.

    Between migraines and my back injections I have missed more work in the last 6 weeks than I have in the last year. They have a reason to be worried!

    Others that offer advice and "cures" I just nod and smile and than ignore the advice!

  10. sixtyslady

    sixtyslady Member

    I know what you mean .My daughter wrote me a lenghty letter telling me that I needed to get up and stop living in my miserary zone because I just have become to comfortable there. if as having Fbro and cfs is fun.
    she also told me she knows many people that our worse off than me and do alot more than I do.
    I need to start thinking about other people and stop dwelling on my little aches and pains. and she has a book for me to read .she thinks I"m doing it for attention and I just need to snap out of it.I have 3 daughters and their all convinced that I just made this disease up, now mind you they"ve never taken the time to even read anything on Fibro or cfs. So until I just pull myself out of this They don"t come near me. Oh she did call and invite us for Easter, But I just can"t go, I think thats why I haven"t been feeling good the last few Days. If I get upset it just takes all the starch out of me. I"m heartbroken over this because we don"t get to see the Grandkids. thats my punishment for bring sick. Thank God our son who still lives at home can understand some what I"m going through and my sister is supportive , and my nephew is. so I do have blessing my life. Hugs Sixtyslady
  11. HagerTX

    HagerTX New Member

    It's frustrating to hear comments, questions etc that indicate other people don't know what we go through, but they THINK they know...

    Communication is an essential key to any relationship but it's not always easy. Maybe just try to reiterate to your mom that in your case, 'constant moving' doesn't seem to improve your condition. Cite that (perhaps others you know through this board), fibro/cfs manifests itself somewhat differently in each person.
  12. Fibrolady37

    Fibrolady37 New Member

    the insurance lady a doctor or a nurse before she started selling insurance?
    Dont worry deena on here you are among friends true friends who will always be here for you whenever you need us.
    Im sending you very gentle hugs((((((.
  13. Roseblossom

    Roseblossom Member

    Bah! It's bad enough to be in pain; you shouldn't have to listen to that nonsense.

    Here's my experience with what works to nip that kind of thing:

    Next time that happens, DO say with certainty & authority

    "Fibromalgia affects each individual differently - there is no one solution that works for everyone."

    And whenever your mom parrots that nonsense about having to keep moving, just say with certainty & authority

    "Fibromalgia affects each individual differently - there is no one solution that works for everyone."

    And KEEP saying it each time as your one & only response to such comments - she'll quickly give up giving you advice.

    Eventually maybe she'll even be moved to ask you how you are feeling, and then actually listen to your answer.


  14. Jo29

    Jo29 New Member

    Honey, tell your Mom that I said that I have been exercising at Curves 3 days a week. Yes, I have been feeling better, but not well.

    Also tell her that even though I have been exercising regularly I have been having one of the worst flares that I have had in a long time and have not been able to work out all week.

    Tell her also that I am going to physical therapy along with exercising and it is not taking away my Fibro. My bad days are still just as bad if not worse, but my good days are really good.

    This is just for you.... I do feel better about myself for trying, but that doesn't mean that I am pain free ever.

    I also have to rest a lot. Just don't fret about what she says if you can. That alone will make you feel bad.


    PS There is no way that I could even think about exercise or physical therapy without taking my meds. I would be curled up in a ball in ball in bed. Actually, I have afraid to go to Curves this week because of the awful pain I have been in. I know how you feel, because sometimes it just hurts so bad to move... even with all I am doing.b[This Message was Edited on 04/13/2006]
    [This Message was Edited on 04/13/2006]
  15. rosemarie

    rosemarie Member

    Sixtyslady ,
    AS I read your post on what people say about your fibro.I was reading it and are you sure that your daughters and mine are not the same or maybe they have been talking to each other? Becaues they sound just like my girls do. Except for my youngest. But she once felt that way too.
    This is my thought and it sometimes works for me. I do my best not to tell anyone what I have. For when I do people ecome crawling out of the walls with "CURES FOR ME" IF you do this or that you will be cured,. I have the help I need but I get the feeling that I am being shoved towards the old revial tents where some one was in a wheel chair and the preacher put his hands on her head and shoved her hard and suddenly she jumps out of the wheel chair and "YELLS I am CURED"!
    I have been told by my husband ,& daughters if I would get off my A## and just exericse ,eat less I would be able to walk better and not be in any pain. RIGHT?! NO way . FIbro is a small part of what is wrong with me. I am sorry but even if I lost the weight I should lose I would stll need the double knee replacement, as my knees are grinding bone on bone.
    And it has been proven that if you lose weight yes I will be more healthy but it would not take the pain away from me. How can it> I have fibro, chronic meyofacial pain syndrome, facet syndrome, radulopathy, degenerative disc disease, spinal stenosis, bulging discs L4-L5** L5-S1, arthritis in my knees, wirst and ankle.
    AT this time in my life I don't feel like exerciing more than the daily streaching I do. Yes if I lost weight I would feel better about me and how I Look " Well that would be after I had the fat rolls removed and the tummy flap removed and that is to much plastic sursgery for me.

    If there was such a thing a a human body shop where I could just walk in and climb in to a machine and POOF a new body no more fibro, no more anything wrong with me and I would look like I did at 30 and I would weigh what I did at 30 that would be great. But as it does not exist I am just stuck with doing the things that I can and do my best to NOT OVERDO and casue me to crash in a a brick wall and have the flare from hades.

    Oh where is Glenda the BGood witch when I need her!
    Rosemarie[This Message was Edited on 04/13/2006]
  16. mme_curie68

    mme_curie68 New Member

    My Mum and family mean well, but they don't "get it".

    This is nothing new for me, as when I had to get sober, nobody really got that either.

    That's why I go to a 12-step program to help maintain my sobriety - nobody but an alcoholic can understand other alcoholics on that fundamental level.

    It's why I choose to come here to talk with others about my FM - nobody really understands FM like other FM'ers.

    If there's one thing I've learned, it's that all of us experience our disease differently - but there are enough of us on here that usually at least one other person may be experiencing similar issues and we help each other as best as we can. That's what its all about.

    Madame Curie
  17. kdeenak

    kdeenak New Member

    You guys are the coolest!! Lots of good advice, as always.

    This may sound pretty harsh, but I have often thought that the people that are so mean and hateful to others and feel they are "making their illness up" and "the pain can't be that bad" need to be really careful because they might end up getting that disease and find out that they aren't making it up!!


  18. musikmaker

    musikmaker New Member

    Wouldn't it be great if those that think they know how to fix us could experience for 1 day what we experience. On that day we could tell them to keep on moving.........ha
  19. ChungieDolor

    ChungieDolor New Member

    Musikmaker and Everyone,

    Instead of a day, how about a month! I think almost everyone goes through this type of treatment. One message pal said it right. You get treated better by a stranger then by your own family!

    At the beginning, my Mom said it was stress, and that you have to keep working, your body will eventually get used to it. yeah right! She now has alzs, and calls me the sick one to her caregiver. We both have hypothyroid, and a zillion other illnesses, but now we relate with one another with the hypothy. I believe she has this dd as well.

    I have had many teary episodes wondering why no one believes me or could be sympathetic to my condition. Just because I am not in a wheelchair, or missing a limb. Those episodes are decreasing with time. Thank Goodness!

    I get different comments from my two older sisters. The oldest used to be compassionate, but now tells me to be strong or else I am going to get in a rut. She is about to retire and is supporting a want a be Pastor who is not working, and a son works when he wants, and will never move out. If she ever complains about something, I will tell her to be strong as well!

    The sister I grew up with, knows a lot of people who have it, and tells me what works for them. If I do not try it, she gets frustrated because I am not serious about getting well. We are supposedly close but I wonder about that now. Mom is living with her, and she is a Jeykel (spell) and Hyde. She is compassionate one minute and defensive the next! I can just hear her saying, suck it up, everyone one has their own probs. Its all sucked up! I have also tried just about everything.

    Just started Lyrica.

    I used to think how sad, that I can not go to my family or friends for support. My husband has been pretty good, and has not left yet! Although no one is perfect!

    I lost a friend because I was not able to see her when she came into town for the Holidays. She did not understand my illness. I'd send her e-mails, and she stopped responding, but she sent me and all her friends a newsletter about her travels, and what a wonderful life she was having. Sadly, she did not marry the man she is truly in love with.

    So on a brighter note, I say thank goodness we have this message board. The person who developed this website should get a noble peace prize dont't you think!


  20. angelkisses6

    angelkisses6 New Member

    Yup me too so many like to give advice but they have no idea what they are talking about also if given the same advice would get upset, I know my mother-law also likes to say things like keep thinking your feeling fine and you HAVE to keep moving then everything will be fine!. Ya ok thats why she also has some health problems that stop her from doing a lot of things but thats diffrent, anyway it seems to happen to all of us,i cant help but wonder if these good people would tell someone who has cancer that they are all the same?. Anyway dont lose hope always know theres the rest of us out there hearing the same thing. Take care,angelkisses

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